Enhancing collaborative decision-making for patients with MS

Multiple sclerosis (MS) is a neurodegenerative disorder in which a person’s immune system attacks the protective sheath (myelin) covering the nerve fibres of the brain and spinal cord. Although MS is a progressive disease, leading to the permanent damage of the nerve fibres and potentially severe disability, there are many different treatment approaches that are designed to reduce relapses and increase time between attacks, ease debilitating symptoms and ultimately slow down disease progression.

Currently, there are several key challenges that people living with MS face. One, there is no specific test that can definitively lead to a diagnosis of MS. Physicians must rely on a multitude of neurological evaluations, radiological MRI scans and symptom tracking, which can differ greatly from patient to patient. Two, we do not yet fully understand the disease biology and underlying immunological causes of MS, so there are no curative treatments, only disease-modifying therapies. Finally, although researchers have made great strides in understanding the mechanisms of MS progression and advancing highly efficacious treatments to slow down auto-immune attacks, some patients do not respond to these treatments and continue to experience progression. The unique journey towards optimising MS diagnosis and care can often have a significant impact on MS patients’ physical as well as psychological well-being.

Today, to help navigate this complex journey, more patients are integrating the concept of shared decision-making, or collaborative care, to help personalise their disease management, improve adherence and ultimately improve MS outcomes.

‘The unique journey towards optimising MS diagnosis and care can often have a significant impact on MS patients’ physical as well as psychological well-being’

Shared decision-making is an inclusive healthcare approach integrating the views of healthcare professionals (HCPs) and patients to create a personalised care plan that includes a treatment decision. This paradigm is particularly important in MS, a disease where poor satisfaction with or adherence to treatment regimen leads to worse disease outcomes, and where patients are more likely to stick with a treatment that they feel more comfortable with. A key area of collaborative care, therefore, includes diagnosis and disease management, including whether and when to begin different types of MS treatments.

Shared decision-making between patients and HCPs is designed to match personalised MS care to patients’ goals, education and knowledge about their disease, as well as personal priorities and preferences, in order to balance optimal compliance and long-term disease outcomes. Future opportunities in streamlining shared decision-making into routine MS care will include clearly and consistently defining standards and measuring the effects on MS treatment based on these unified models.

To enhance collaborative decision-making among individuals with MS, care teams and healthcare stakeholders, new methods of engagement include providing credible, easily understandable sources of information about treatment and disease progression, improving patient literacy, engaging in active home monitoring and adherence measurement, and ensuring HCPs improve communication through training and established frameworks. The most acute implementation of this shared decision-making is in providing a better scope of treatment choice based on disease course and patient preference. Indeed, a randomised, controlled trial (MS-SUPPORT) showed increased adherence probability to disease-modifying treatments, as well as improved long-term mental health, in people living with MS.

On a longer-term spectrum, shared decision-making will also be critical to help HCPs better track disease state and disease progression. Newer approaches to monitoring lesions indicating MS damage to the central nervous system may rely on evaluating changes in the blood and spinal fluid. Integration of artificial intelligence (AI) algorithms and deep learning may then aid in analysis of medical imaging and laboratory data analysis to understand nuanced changes in the brain – even before symptoms manifest. As these new frontiers in the treatment of MS emerge, it is more important than ever for HCPs to be able to provide balanced, evidence-based information about different options for care.

The therapeutic impact of redefining these relationships between patients, their caregivers, HCPs and research stakeholders can be immense. Shared decision-making can improve patient adherence to disease-modifying therapies. It can also improve patient engagement with their MS management, which includes education, home monitoring and communication with HCPs. Studies show that a vast majority of patients prefer a shared decision-making approach compared to a traditional physician-centred model. As a result, when optimised, collaborative care results in improved patient-reported well-being and overall quality of life, and improved patient satisfaction that they are receiving the best treatment possible.

Moreover, shared decision-making can help inform case-by-case treatment decisions for patients in managing the course of their MS. This is incredibly important for people living with MS, as initiating the correct course of treatment at the correct time can have immense impact on patient disability outcomes. Recognising this, pharmaceutical companies are increasingly incorporating patient perspectives and preferences into their research and clinical development processes. Developing clinical trial endpoints and shaping trial design around patient feedback is an example of the value this can bring.

‘Collaborative, shared decision-making can result in integrating all stakeholders involved in patient care, empowering patients to be advocates and active participants in managing the course of their MS’

The last 30 years have seen a significant shift in MS patient outcomes. Newer treatment approaches have made immense progress in reducing disability burden and improving the quality of patients’ lives. Over the coming years, newer advances in disease tracking and identification, aided by AI algorithms, also have the potential to significantly improve diagnosis and disease management. Nevertheless, helping patients navigate a complex diagnosis and a highly variable illness with differential outcomes can be challenging.  Collaborative, shared decision-making can result in integrating all stakeholders involved in patient care, empowering patients to be advocates and active participants in managing the course of their MS and advocating for the best possible course of disease management for each individual.

The responsibility of promoting a patient-centric model of shared decision-making in the future lies with multiple healthcare stakeholders, as well as patients themselves. HCPs must avail themselves of training tools to discuss and implement treatment goals, address patient concerns and better understand the various life experiences and individual factors that may impact patient preferences. Scientific researchers and pharmaceutical companies can help advance understanding of the various disease drivers of MS by integrating relevant patient-reported outcomes, with the ultimate aim of producing better ways of diagnosing, tracking and stopping disease progression. Finally, patients should feel empowered to be their own best advocate about their MS journey, to communicate all aspects of their disease journey with HCPs and to take an active approach in fully understanding their personalised treatment plan for optimising adherence and outcomes.